Explain Procedures & Results

Gene Test or Not? is an online decision-making tool designed to help people decide about whether they should have the APOE genetic test.

This paper describes the development of a standardized approach to disclosing amyloid imaging research results to people with mild cognitive impairment.

Research participants who intend to donate their brains to a study on Alzheimer’s and related diseases are reliant on family members to fulfill the donation plan. Thus, family members play a pivotal role in increasing brain donation rates, particularly among underrepresented groups. In this study, researchers conducted focus groups with a total of 15 Latino adults who each has a parent age 65 or over. Analysis of the discussions support inclusion of family members during all stages of the...

People with Alzheimer’s disease are vulnerable to therapeutic misconception, particularly, the conflation of routine clinical care and scientific research. This misconception can compromise the informed consent process by causing prospective participants to underappreciate the level of risk involved in trial participation. The authors advocate for a more comprehensive informed consent process that accounts for the uniqueness of Alzheimer’s disease, creates a more productive and clear...

The Michael J. Fox Foundation, which focuses on elimination of Parkinson’s disease, has developed study recruitment materials that are applicable to other areas of disease research.

Guidance documents for returning individual and aggregate clinical trial results to participants were developed by the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard to support the goal of greater transparency in clinical research.

The Patient-Centered Outcomes Research Institute (PCORI) created this repository of more than 150 tools and resources for use with patient-centered, stakeholder-engaged research. Repository items are developed by recipients of PCORI research grants, and the Institute makes them publicly available to encourage the use of these engagement practices and methodologies within the broader healthcare research community. The database can be searched by keywords or by criteria in the following categories...

This web page of the Indiana Alzheimer Disease Center answers questions about its brain donation program.

The NIH website, NIH Clinical Trials and You, contains several pages for researchers and trial sites: Improving Visibility of NIH-Supported Clinical Trial Activities and Results: Describes the NIH policy, similar to the FDA “Final Rule” reporting requirement for funded clinical trials: Trials must be registered at ClinicalTrials.gov, and summary results must be submitted no later than 1 year after the primary completion date. Clearly Communicating Research Results Across the Clinical Trials...

This paper describes the design and development of a tablet-based decision support tool to enhance shared decision making and decisional capacity for people with a genetic condition that causes development problems and cognitive impairment who are participating in the informed consent process.